Ebola stigma increases burden for survivors in long recovery effort

Survivors of Ebola face stigma, suspicion and possible side effects as they work back from the ravages of a devastating disease racing through West Africa.

“Many of our neighbors won’t come to our house now,” said Fudia Sesay, 49, of Sierra Leone, who was released from a treatment center last month. “My friends don’t visit, thinking that if they come near our house, they’ll catch the virus.”

The few who do talk to her, she said, are “in denial,” believing Ebola doesn’t exist.

Sesay was infected when she shared her niece’s meal, using her spoon. The relative, a nurse who didn’t know she was infected, later died. The two are among 783 people infected in Sierra Leone, which recorded 334 deaths as of Aug. 11 since the outbreak began in January, the World Health Organization said.

While more than 40 percent of people infected in West Africa have survived, their return to normalcy, physically and mentally, will often be a long journey.

Sesay was isolated for 18 days at a hospital in Kenema, the country’s third-largest city, before being cleared. She has been home since July 21, but said she hasn’t yet tried to reclaim her catering job at a restaurant in town.

“I don’t even know what the reaction of my boss would be if I show up to start work,” she said.

There are other concerns as well. While only a few researchers have studied survivors from past outbreaks, their findings suggest that side effects ranging from lingering joint pain to eye swelling can continue for years.

The evidence comes from four studies conducted in the Democratic Republic of the Congo and published in the Journal of Infectious Diseases in 1999. One of the studies identified uveitis, a swelling of the middle layer of the eye, in about 15 percent of survivors following a 1995 outbreak in the Democratic Republic of the Congo.

In another study, two-thirds of survivors reported joint pain 21 months after recovery.

“Uveitis could eventually lead to blindness or seriously compromise vision” if untreated, said Amar Safdar, director of transplant infectious diseases at NYU Langone Medical Center. “They really shouldn’t use traditional medicines and shouldn’t wait it out for it to go away on it’s own.”

The response may be due to an over-reactive immune response, said Safdar, who wasn’t involved in the studies. “Once someone has recovered from the infection, the host’s own inflammatory and immune response takes a life of its own, so to speak,” he said in a telephone interview.

Sesay said she has experienced knee pain. Other survivors she knows have also been complaining of pain, she said.

At the same time, another survivor, Sulaiman Kanneh Saidu, a health worker in Koindu, Sierra Leone, said he has only experienced some dizziness, which stopped after two weeks.

Saidu, 47, who is the supervisor of the Ebola Management Center in Koindu, said he caught the virus because fear of Ebola led patients to lie about where they had been and who they had been in contact with.

“Since we inherited this thing from Guinea, people were going with the feeling that there is a motive attached to it,” he said in a phone interview. “There was that kind of objection to the reality that Ebola is existing.”

People don’t want to be associated with the health crisis, he said. “When you ask them about their traveling history they give you false information.”

Such lies led Saidu to contract the disease himself. He was asked to examine a sick woman, and was told she had never left Sierra Leone and had not attended any burials, “which was false news,” he said. Soon after, he was infected.

For 11 nights, Saidu was isolated in a treatment center, praying and focusing on keeping his stress levels low.

When patients hear Ebola has no cure, he said, “the stress gets intensive and they develop some amount of depression. Some give up on life.”

He survived, and was discharged on July 15. Saidu was given protein-rich nuts, multivitamins and condoms, and warned that the virus could linger for as long as three months in his sperm.

Along with possible physical ailments, survivors also face psychological after-effects, according to Laurie Garrett, a senior fellow for global health at the Council on Foreign Relations in New York.

After the 1995 outbreak in the Democratic Republic of the Congo, survivors were psychologically traumatized years later, said Garrett, who covered the outbreak as a reporter for New York Newsday, and returned three years later to visit survivors.

“Many had seen their own families and loved ones turn against them” when they caught the virus, “and they have never recovered from that sense of betrayal,” she said in a telephone interview.

While Sesay’s neighbors are keeping their distance, she said she is happy because her family accepts her.

“This activity of re-integration of surviving patients in their villages and communities can take a long time and sometimes needs a great deal of explanations and several visits to ensure that the person has been fully accepted into the community,” Magali Deppen, a spokeswoman for the aid group Doctors Without Borders, said by email. “For patients, the impact of Ebola doesn’t end when they are discharged.”

Doctors Without Borders helped Saidu with his homecoming. The local authorities were told that he was going to be discharged, and spread the word that he was free of the virus, and would remain immune to the strain.

Today, “communities remain fearful of this ‘new’ disease and do not trust health workers or facilities, which makes it extremely difficult to contain the epidemic,” Deppen said. “There are still critical gaps in all aspects – medical care, contact tracing, epidemiological surveillance, data sharing, effective alert and referral systems, safe burials and community education and mobilization.”

Saidu is back to work and is using his experience to educate his community, spreading the word that even though there is no cure, one can survive.

He estimates that 205 people have died in the community, which has convinced the majority that Ebola is, in fact, real.

“My advice to the communities, especially those who probably be might be infected, is to take quick decision to get to the treatment center,” he said. “There are chances for people to survive. Don’t be thinking of death.”